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Old 08-05-2007, 07:22 AM   #1
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Enlarged Thyroid with normal TSH levels??

I have an enlarged thyroid but have normal TSH levels -- first they said that it would shrink based on whether the levels were too high or too low -- but when the blood test came back normal -- now they're not sure what to do. Plus, I am having severe vision problems, so they suspect a pituitary problem. Has anyone had this problem and what can I do. I don't even know what to ask them. Any help would be greatly appreciated.

 
Old 08-05-2007, 07:34 AM   #2
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Re: Enlarged Thyroid with normal TSH levels??

Do you know what your TSH is, your number?

See if they are testing your actual thyroid hormones, the free T3 and free T4.

Get copies of all your lab reports, don't settle for being told they are "normal".

A few years ago all these "experts" thought that a TSH as high as 3.5 or even 5.5 was fine, now many of them (but not all) know it needs to be lower, around 1.0 or at least below 2.0


A still smaller group now know that they need to test ALL the thyroid hormones, NOT just the TSH and free T4 to determine if your thyroid levels are optimal.
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Last edited by GCC; 08-05-2007 at 07:43 AM.

 
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Old 08-05-2007, 07:53 AM   #3
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Re: Enlarged Thyroid with normal TSH levels??

The blood test says: TSH Normal: 1.33 Reference Range: 0.35-5.50
Then says FT4, if indicated, not indicated. I asked about what the sizes are:
It says: Right side: 2.12 cm in AP dimension, 2.06 cm in transverse dimension and 5.08 cm in length. Left-side: 1.91 cm in AP dimension, 2.13 cm in transverse dimension and 5.21 cm in length. Isthmus: 8.9 mm in thickness above upper range of normal. Generalized decreased vascularity is noted. Goiter formation secondary to hypothyroidism. Recently, I have been having a problem sleeping, when I lay down, I will awake approx. 1 hour after sleeping and be unable to swallow. My throat completely dries out. It is not sleep apnea (sp?) . Is it the thyroid also causing this? I am very confused on what all this means? I keep asking, and no one tells me. So, I'm in need of some help.

 
Old 08-05-2007, 08:22 AM   #4
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Re: Enlarged Thyroid with normal TSH levels??

They didn't test further because your TSH came back in "normal range".

But the TSH will often not get too high or too low for a few weeks after the thyroid hormones (free T3 and free T4) get too high or too low.

The reason for that...TSH = thyroid stimilating hormone, it is a pitutary hormone that prompts the thyroid to produce more thyroid hormones (T3 and T4).

So they test the TSH and if it is too low that (usually) means that the thyroid hormones are to high. AND if it is too high that (usually) means that the thyroid hormones are too low.

I would insit that they test my free T3 and free T4. There is no reason not to test these too. These are actual thyroid horones.

Your TSH is good , for now. OPtimal TSH is around 1.0 or below 2.0


Optimal free T3 and free T4 is in the middle to upper part of the "normal range" NOT in the middle to lower part of the range.

You may have to insist that they test your free T3 and free T4 .
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Old 08-05-2007, 08:48 AM   #5
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Re: Enlarged Thyroid with normal TSH levels??

My vision is getting worse by the day. I'm afraid I'm going blind. It is so blurry and I've had these vision field tests and they said that it is substantially decreased, but they keep saying nothing points to something specific. Also, I've got such a headache, sometime it is very hard to stand up. Can this be caused by this also??

 
Old 08-05-2007, 09:17 AM   #6
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Re: Enlarged Thyroid with normal TSH levels??

my thyroid gave me bad sleep apena for years, i would wake up and it felt like someone choked me.

 
Old 08-05-2007, 09:51 AM   #7
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Re: Enlarged Thyroid with normal TSH levels??

I'd say that with the vision problems, headache and goiter that a pituitary mri is in order. I too have normal tsh. I'm hyperthyroid and have a goiter. I generally have elevated FT4 and FT3 levels that accompany the normal tsh. I do not have headaches or vision problems. I've been diagnosed with pituitary dysunction. An mri a couple weeks ago ruled out a pituitary adenoma. If insurance is an issue or the doc's reluctant to order an mri, a test known as a TSH alpha subunit should be done. It's a pretty good marker for telling whether there may be an adenoma present as long as you have not started to enter menopause or have had an ovary removed cause the higher FSH will increase the alpha subunit, making it harder to interpret. They should also request a FT4 and FT3 on you regardless of the TSH.

In pituitary dysfunction, the TSH is often times more biologically active and even within "normal" range can cause a goiter. It just has a bigger kick to it than a regular person's does.

The other thing you might want to look into is iodine excess or deficiency. That can cause a goiter too. They would still have to look into the cause of the headaches and eye problems though. They may be related or they may not be.

Hope you get things sorted soon.

Take care,
Helen

 
Old 08-05-2007, 11:58 AM   #8
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Re: Enlarged Thyroid with normal TSH levels??

Thanks for the replies. I am just really confused. Most of the time I just want to just lay down because it has become really difficult to look at things. I'm sort of stuck between is it just blurry vision or double vision. I've also got this numbness/tingling going on in my head right and left side, in addition to the headache -- the doctors don't know if it is some kind of seizures or not. But, they have been giving me Depakote and Lyrica to calm them down. It helps a little but not greatly. Then, these passed months for some reason my sugar count has gone up and my heart rate has increased to 146 bpm. So, I'm taking medication for both until they figure it out. And for a while it was really hard to get my legs to work well, but that has temporarily passed. Does thyroid also do this? I'm just so tired, it just seems that one day this will all catch up with me and I would really like to stop it before it does.

 
Old 08-05-2007, 12:14 PM   #9
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Re: Enlarged Thyroid with normal TSH levels??

Have they done an mri? What about an eeg? Thyroids can do just about anything you can think of. Some of the symptoms can mimic almost any disease and if you look at enough lists of symptoms, everyone will find at least a couple thyroid symptoms even if they have no thyroid disorder at all.

It's tuff being sick and tired. It's scarey. It sucks. However, it sounds like they are looking very hard for a reason that you are experiencing these symptoms. Hang in there. Things always seem to work out in the end.

Helen

 
Old 08-05-2007, 12:24 PM   #10
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Re: Enlarged Thyroid with normal TSH levels??

hi brown owl i agree with helen it would be nice have all the thyroid tests and post them and keep track but with vision problems and enlarged thyroid you should have the mri and of cours you need to se e a specialist or endo sorry dirty word but i dont think it should be left in the hands of your gp as this is distressing for you and needs to be investigated fully good luck and i know you will get it sorted out love katxxxxxxxxxxxxxxxxx

 
Old 08-05-2007, 12:29 PM   #11
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Re: Enlarged Thyroid with normal TSH levels??

This is the strange thing. In February, they did this MRI because I lost the sight in my left eye. It came back with the following: Moderate cortical atrophy, Minimal ventriculomegaly. Several foci of increased signal on T2 weighted sequence and FLAIR involving the white matter corona radiata,specifically bilateral frontal and left parietal regions. It is unclear if these are microangiopathic in nature or represent some minimal or early demyelinating process. (So, long story short -- they sent me to a neurologist -- who didn't know -- except she put me on Depakote and Lyrica).
Then, it turns out I had a torn and detached retina of the left eye and now I can't see out of it much at all. The day after it happened I got a headache and I've had it ever since. Then, a month later the right eye is having problems seeing. So, my family doctor ordered another MRI -- April -- Stranger, now they say there are no abnormalities. However, now August, it is getting worse, I can't see very good at all, I've tried to get new glasses and the optometrist/opthamologist can't get them to have a prescription, every time they check them, it changes. So, they've ordered another MRI -- this time of the Optic Nerve with chiasm(???) and very fine nerve slices. I haven't a clue. I don't understand. I can't have something in one MRI and it be gone in the next, can I??? I think I may be a little depressed, but maybe it is just frustration. I'm so stuck.....I don't know what to do. I find it very hard to concentrate on things, it could be the drugs, it could be whatever this is, but I can't tell anybody because I don't want to worry them.

 
Old 08-05-2007, 12:52 PM   #12
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Re: Enlarged Thyroid with normal TSH levels??

You can always tell us cause there's always someone round here to listen. Ok?

I thought there might have been a bit more story behind it. It is unlikely that one would show something and the other not. Were they read by the same radiologist? If they weren't was the second radiologist even aware that the first one was done and did he have a copy? Even when I've provided copies, I've still seen blatant errors in some of my reports. I would request copies of not just the reports but the scans themselves and have them reviewed by someone else and also provided to whoever is going to do this next mri. You're going to need to stay on top of this one. At least it will give you something positive that you can do to help yourself.

When I had my mri done a couple weeks ago, the preliminary report had just come in right as my appointment with the gp started. The one comment he made is that it appeared to be my report but he also wanted to verify that it was MY report cause he said he had seen mix ups in the past where the wrong name was on the wrong report. Scarey but evidently it does happen.

Of course you're a little depressed. Who wouldn't be. But like you say, the frustration level can far surpass the depression. Those drugs will mess with your concentration and it takes quite a while to get over that effect.

You aren't stuck. You will get thru this. Just try not to let it get you down too much. Keep at it and keep at the docs. There's an answer out there somewhere.

hugs,
Helen

 
Old 08-05-2007, 01:15 PM   #13
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Re: Enlarged Thyroid with normal TSH levels??

Thanks for the replies. I really appreciate it. Your are correct, they were read by 2 different people. I did get copies of the CDs and the reports because for some reason they keep losing them. I'm not sure which one to believe, but if I was a betting person I would have to go with the first one. Because there is some type of seizures going on -or- something in their family. I have found myself staring at things and then sort of "catching up" with time. I've also found that doctors don't want to be responsible for saying anything. If it is not right in front of them, then you don't have it. I don't know how many times I've heard the line -- "must not be too bad, it hasn't killed you yet". Also, I'm not the smallest person in the world. I'm short, yes, but I'm not thin. So, I get the line -- you know what your problem is -- "Do you know how much you weigh?" -- my answer back to them is always the same, I weighed this before I had these problems, it is not the cause of these problems, do not get hung up on it. Sorry, I think this may have also given me a bit of an anger issue too. Please, forgive me.
I'm losing any respect I have for doctors. But, the thing that is getting the best of me is that I don't think I can continue on like this either.

 
Old 08-05-2007, 01:42 PM   #14
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Re: Enlarged Thyroid with normal TSH levels??

Ok. I think I know where you're coming from. I've been sick my entire life. Sometimes major almost dying sick and sometimes just a little sick. I've been run in circles by doctors. Nobody willing to commit. Nobody willing to try and find out what was really wrong. Somebody recently said to me that my problem was I was just in the too hard category.

While being placed in this catergory and being kinda brushed under the rug a certain major problem was overlooked. 15 years ago. Something that could have easily been taken care of back then. Instead, it was ignored and I now suffer the consequences.

This go round I finally found a gp who is absolutely marvelous. I am now well on my way to a formal diagnosis. He threw out everything from before and started from scratch. He cares and he's doing something about it. I never thought that there were doctors out there like that but there are.

There's been several times over the years that I didn't think I could continue but I did and now I'm really glad I did. I learned as much as I could and now completely participate in all of the medical decisions and follow up on everything that's done. The second I think there's a mistake, I speak up. It's gotten me a lot farther than I've ever been before. I'm at the point where I don't care who I tic off cause this is my body and this is my life. I came right out and told my gp that I couldn't continue with things the way they are and that he as my pcp was responsible for my health and he darn well better do something about it. He said ok.

There's nothing to be sorry about. Anger is a very appropriate response to what you've been thru. Turn that anger into something positive and work toward getting yourself well.

 
Old 08-05-2007, 02:13 PM   #15
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Re: Enlarged Thyroid with normal TSH levels??

Thank you for understanding. I've just come to a point that I don't know what to do next. This is weird but the doctor I trust the most is my rheumatologist. Only because she actually tries to find out what is going on. But, she keeps telling me, you do realize you don't have rheumatism. Of which I always, yep, I know, but I trust you. So, she ordered the 1st MRI and found the results when they got lost, sent me to the neurologist and to the opthomalogist. I see her again for a follow-up and will let her know about the thyroid and pituitary, all which they originally said was ok and now they have changed their minds. Each time I go back to see her, I'm in worse shape than before. This time I may have a bit of a problem trying to see anything, but maybe they can fix this before I lose it altogether. Maybe she knows more than all of these put together (hmmm??) Though I did find a very interesting thing. When I inherited a female rheumatologist, I also got a female neurologist, female opthamologist, female infectious disease person. (a whole complete female network -- weird ay??)

 
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